11 Things Only Someone With Endometriosis Understands

11 Things Only Someone With Endometriosis Understands

SEPTEMBER 22, 2015 | SARAH KLEIN

When Michelle Johnson was diagnosed with endometriosis, she thought she had the flu.
 
"Winters here in Chicago are brutal," she says. "So when I found myself very fatigued and lethargic with a bad fever, I thought it was just the weather."
 
She ended up in the ER after the fever hit 104°. After 9 hours of tests for life-threatening concerns like a ruptured appendix, she found out she actually had stage 4 endometriosis. Endometrial growths had gotten so large they were pressing on her kidneys, restricting the flow of urine, which had led to a kidney infection that caused the sky-high fever. She'd been having increasingly heavy and frequent periods, but she thought it was "part of being a woman," she says. It wasn't: "The doctors guessed I had had endometriosis for at least 10 years, unchecked, undiagnosed." She was 33. 

A little endometriosis 101 for the unfamiliar: Cells that typically grow in the lining of the uterus, called the endometrium, can end up in other places, where they really don't belong, says Marc R. Laufer, MD, a Harvard professor, chief of gynecology at Boston Children's Hospital, and the director of the Boston Center for Endometriosis. "Those cells implant in those other locations and cause pain if left untreated or undiagnosed."

That's because they grow—and bleed—as if they were still at home in the uterus. "Every time a woman has a period, there are these micro-periods happening," says Tamer Seckin, MD, a specialist in endometriosis in private practice in New York and the co-founder and medical director of the Endometriosis Foundation of America. The immune system is altered in some way in women with endometriosis so that no matter how much swelling and inflammation the body sends to the pelvic cavity to try to clean away the blood that doesn't belong, the implanted cells are still able to thrive, acting almost like cancer in many ways. Growths on the ovaries, called endometriomas or chocolate cysts, can permanently damage a woman's fertility. Cysts may grow on the bowels, bladder, or, more rarely, even infiltrate the lungs.

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The Personal, Painful Ordeal of Women with Endometriosis
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An Interview with Dr. Tamer Seckin, Endo Expert
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Reviews

  • Kim Molinaro

    Kim Molinaro

    Prior to meeting Dr. Seckin and reading his book, “The Doctor Will See You Now”, I knew little to nothing about endometriosis. I was led to believe that endometriosis was not a serious condition. I was told that the pain could be managed by taking the “pill”. I was told that the cysts on my ovaries were harmless. I was…

  • Rebecca Black

    Rebecca Black

    Fast forward 5 years to find out incidentally I had a failing kidney. My left kidney was only functioning at 18%. During this time, I was preparing all my documents to send to Dr. Seckin to review. However, with this new information I put everything on hold and went to a urologist. After a few months, no one could figure…

  • Monique Roberts

    Monique Roberts

    I'll never stop praising Dr. Seckin and his team. He literally gave me back my life.

  • Erin Brehm

    Erin Brehm

    I had a wonderful experience working with Dr. Seckin and his team before, during and after my surgery. I came to Dr. Seckin having already had laparoscopic surgery for endometriosis 5 years prior, with a different surgeon. My symptoms and pain had returned, making my life truly challenging and my menstrual cycle unbearable. Dr. Seckin was quick to validate my…

  • Anita Schillhorn

    Anita Schillhorn

    I came to Dr. Seckin after years of dealing with endometriosis and doctors who didn't fully understand the disease. He quickly ascertained what needed to be done, laid out the options along with his recommendation and gave me the time to make the right decision for me. My surgery went without a hitch and I'm healing very well. He and…